The Journey of James Weston

Sunday, April 4, 2021 Morning:  James is needing another IV line put into his right arm due to the the one in his left arm went bad. 😞 They cannot use the port in his leg due to the sedation medications not being able to cross paths with the diuretics. Overall, James is reducing his inflammation slowly. He had a large bowel movement last night, which was good.  Here is James little arm getting ready for the new IV.  Update : Unfortunately, after two pokes (one in his right arm and his right foot), they couldn’t find a stable port for the IV 😢. So, now they need to try on his left arm and see what they can find. So many pokes and needles on our little James.  After a failed attempt in his left arm too, they decided to give a different form of his Diamox (to help with his acid-base balance) that he could get through his feeding tube instead of his vein. They think his veins won’t flush due to the blood flowing to all the other parts of his body, plus the me...

Saturday, April 3, 2021 Update:    James wishes mom a Happy Birthday today!!  She’s been incredible during the past 100+ days and deserves to celebrate her special day. How did James celebrate?  With keeping his PEEP at 10, his FIO2 at 40, and a cute round head that everyone keeps complimenting! 👶  Overall, things are staying pretty steady around here while James stays sedated and paralyzed until they do the trach change (anticipating Monday). James shows us if he’s uncomfortable with an increase is heart rate or blood pressure. He shows us if he is having any complications with an increase in his Peak (one of the Ventilator numbers).  The medical staff in the PICU have been ON TOP OF IT!  An alarm goes off and they are in here very quickly.  They also come check in ever 15 minutes if there isn’t an alarm to just check his temperature.  The sleeping arrangements for the parents isn’t the best, but the care for James has been great....

Friday, April 2nd, 2021 Bed is tilted up to help his lungs. He has a lot going on. Update: James is on a lot of meds! See photo below. In addition, they have started James on Lasix because of fluid retention and edema. James is also getting a treatment of Mucomyst (via the nebulizer) which is added with albuterol to thin and loosen mucus. They are going to continue G-tube feeds at 14 ml/hr with EMB fortified to 22kcal.  We are holding on weighing him since we would need to move him around for that. It will be interesting to see how much weight he has gained after this week.  Vent Settings FiO2: 45 PEEP: 10 (after the x-ray, they saw he was overinflated so they lowered this)  Rate: 40 Tidal Volume: 24 PEAK: 29 (sometimes up to 68 at night!) FAQs - Understanding Life with a Trach Why did James have the tracheostomy and G-tube surgery? In a nutshell, the tracheostomy was done for James' brain development not for his lungs. Although there are some slight improvements to the ...

*Sorry this post is going to be brief. The original post was about 3 days in the making (regarding why James got the trach), but everything deleted. 😭😫😩🥱😞 That will have to be for another day. So... Thursday, April 1st, 2021 Late night/early morning post surgery update: - They turned on his heater because he was running a lower temperature. He also has also a rectal probe to take his temperature 24/7. - They put an ointment on his eyes to help with lubrication because he is sedated, paralyzed, and the heater doesn't help. Morning Update: James will be sedated and paralyzed until Monday, until they do the first trach change. Shortly after that we should be going back to the NICU.  Today they started James on a continuous feed drip at 2mls. They will be increasing these feeds every 2 hours until they reach 14 mls. Side Note: Mom pumps about 1200mls/day so it looks like we will be filling up our 2nd deep freezer. Since you never know when you may lose your supply it is hard for u...

Wednesday, March 31st, 2021 James has his surgery this morning, he is 38 weeks gestational. Originally scheduled for 8am, then 9:30am, and they finally brought him back at 10:30am. Ventilator Settings: His PEEP was changed from 14 to 12, and his tidal volume was increased from 19 to 24. They will be doing a PICC line right after surgery. Since a lot of times babies' IVs will fail, the PICC line will ensure he's getting the sedation he needs. They'll be placing this in his thigh. As they wheeled James off for surgery Mom and Dad stayed in the room and hysterically cried in each other's arms. 😢😭 11:45am Update: An RN called from the OR with an update...Surgery started at 11am. As of 11:45 the G-tube surgery is complete and went well and the tracheostomy surgery is 5 minutes in. ( Mind you we were told by a nurse that the OR is trying to reach us and we need to get on the phone with them. We immediately thought the worst because we didn't expect a phone call with an ...

Tuesday, March 30th, 2021 Early Morning:  James had physical therapy but did not tolerate it very well. Unfortunately our PT missed a really great morning where James actually stood for the first time. We don't have a photo of it but it happened. Mid-Morning: Early this morning we found out that James is getting scheduled for surgery for tomorrow!! There was a last-minute opening so this morning everyone is rushing around to coordinate this. Today we are signing consent forms with GI, ENT and Anesthesia. James will be getting a tracheostomy, a g-tube, and possibly a circumcision. The circumcision may or may not be done because it is swollen. Although it would be ideal to get this done while he is on anesthesia we wouldn't want to do something out of convenience if it is not the right time and could possibly need to be redone later. Our nurse made his tape into a Football today. 🏈 (Those are not stitches) Afternoon:  Boy, it was a whirlwind of an afternoon! Non-Stop since 10:0...

Monday, March 29th, 2021 Xray this morning showed no real changes. Last night he weighed-in at 3150 grams (6lb 15 oz). Other than that he just slept all day and enjoyed his new swaddle that Mommy bought him from Lou Lou and Company. He loves a stretchy swaddle! #softestever James bought the nurses some amazing Columbian pastries from a local place down the street. We brought them in since we had one of our favorite nurses on Day Shift today!  Getting some morning rays ☀️ Slowly getting his arms out...

Sunday, March 28, 2021 Jimmy likes the night shift. 😴 He sleeps during the day, and is awake at night. ⏰ The only change for today is that James' feeds increased to 54 mls. Dad was able to get some work done while Mom held for 2½ hours. Dad also read him some new Dr. Seuss. 📖 James is so appreciative of all of his books that he has received! 😘 Thank you to the Busillo's, the Biggs', the Vincent's, fellow Capricorn 🐐 Mags, and "Aunt" Brittany. 📚 Blood gas this morning was 67.2 🩸, which has gone up a little bit. Blood gases are currently every 48 hours. His FiO2 has been ranging between about 43 and 50. 🫁 The milk room is still trying to figure out the best process for "making the milk" (which is added fortifier to the breast milk). They were originally doing this internally in the milk room, then they had the nurses doing it in the individual rooms, then moved this process back to the milk room to avoid the chance of infection.🍼 Unfortunately,...